2 children in recovery, one travels to New York for further treatment

By Dorothy Bliskey
Gannett Wisconsin Media

ROSENDALE — While her two young friends with the same rare form of cancer continue to recover, 5-year old Lilyana (“Lily”) Barthuly and her parents will fly to Sloan-Kettering Memorial Hospital in New York City for additional treatment.

The hope is that Lily, daughter of Josh and Penny Barthuly of Rosendale, will also be able to enjoy continued recovery from neuroblastoma — a deadly cancer that invaded her body in the spring of 2008.

Lily, along with Lieym Bovee, 2-year-old son of Jeff and Angie Bovee, Fond du Lac, and Lydia Ford, 5-year-old daughter of John and Bernadette Ford, Rosendale, were the subject of a story in December 2008 in The Reporter.

The story brought to light the irony about three children living in close proximity all diagnosed with the rare disease within a month’s time.

Three cases in the Fond du Lac area looked excessive, according to statements from Dr. Leslie Robison, a researcher and chairman of the Department of Epidemiology and Cancer Control at St Jude Children’s Research Hospital in Memphis, Tenn.

He noted that neuroblastoma represents only 8 percent of all cancers among children and strikes 1 in 100,000 children annually.

Statistics

“It could be a random event, but state statistics are required to determine the degree of excess these three cases may represent,” Robison said. “It’s very rare.”

Statistics at the Wisconsin Department of Health revealed 53 children were diagnosed with neuroblastoma in Wisconsin over the most recent five-year period analyzed. While no conclusion was drawn, researchers contacted for the story agreed that, although it was unusual, it was most likely coincidental that the cases were so close in proximity.

Lydia, Lieym and Lily all received treatment at Children’s Hospital in Milwaukee, including surgery, chemotherapy, stem cell transplants and more. Lily received some of her treatments in Green Bay.

Both Lydia and Lieym are in remission. Their mothers express cautious optimism as their children are monitored by doctors monthly, and sometimes more often, due to the aggressive nature of the disease.

Lieym Bovee, whose cancer initially began behind his eye, now enjoys the normal fun and frolicking of a 2-year-old, but suffers from side effects of the cancer and the treatments used to kill it. He wears hearing aids, and the tumor, although now considered “dead” or dormant, remains behind his eye.

“I am taking baby steps and enjoying each day,” says Angie Bovee. “We look forward to future plans — trying not to concentrate on what could happen.”

Lydia Ford, whose neuroblastoma resulted in the loss of one kidney, shows no signs of cancer cells.

“I am so reserved about celebrating too much, but I rejoice every day God gives us,” says Bernadette Ford. “Lydia is full of energy, and to look at her, you’d never guess she was so sick. Occasionally, she’ll say, ‘Remember when I had those bad bugs?’”

“We have high hopes for Lily in New York,” Ford said, noting that she baby-sits for Lily Barthuly and her sister Alissa occasionally. “We don’t live far from each other.”

New York

In an attempt to arrest their daughter Lily’s cancer, Josh and Penny Barthuly are flying with Lily to the Sloan-Kettering Memorial Hospital in New York City, a renowned cancer center.

“Lily’s doctor recommended it when we asked if there was anything else that could be done,” said Penny Barthuly, noting that three doctors on staff specialize in neuroblastoma.

The treatment she will receive in New York is an antibody therapy that will direct Lily’s immune system to attack the cancerous tumor that is still partially remaining near her spine. The family could spend one week a month there for up to six months.

According to the Sloan-Kettering Web site (www.mskcc.org), the 3F8 Monoclonal Antibody therapy is part of the hospital’s standard treatment for high-risk neuroblastoma and is only available at Sloan-Kettering.

Penny Barthuly says their lives have hovered around hospitals ever since Lily was diagnosed with neuroblastoma.

The crisis has taken a toll emotionally and financially.

“It’s tough trying to work and wanting to be with your sick child,” she said.

Other expenses accumulated related to gas and vehicle wear and tear during trips to Milwaukee and Green Bay hospitals over the 18 months, she said.

Although she and her husband hold jobs with insurance, Penny Barthuly says her job of 19 years will most likely be reduced to fewer hours without insurance.

“Losing my full-time status and insurance is pretty much inevitable,” she said. “My bosses have been wonderful working with me, and around all the appointments we have.”

She noted that she’s used all of her family medical leave and vacation.

“I look at it like God has a plan for us and will help us through,” she said. “This is my daughter and I need to be with her. It’s really tough, but if something were to happen to her, I can’t get back the time with her. I need to spend as much time with Lily now as I can.”